Day 68- Tuesday
Had a bit of a reality check last night. Found a really good website (http://www.chemocare.com/managing) that talks about chemo side effects. Has just the right balance of medical facts and practical advice. Decide to look up my current symptoms and I discover I have cancer related fatigue (real medical thing!).
Now doesn’t sound ground breaking but I didn’t fully understand fatigue. I thought fatigue was feeling tired and sleeping a lot, a bit like I was last week. In fact it is a lot more. It pretty much includes all my symptoms: weakness, lack of energy, unable to make decisions, feeling mentally and physically defeated, general malaise, stiff shoulders, weak legs, loss of attention and interest, tiredness not relieved by rest etc etc.
So it gives me a number of things I need to do to help myself that I am not currently doing.
1. Lower expectations and set new goals for the next 5-6 months: this I feel is going to be my biggest challenge. Because I have felt so good after the first two cycles I assumed that this will be what I am like every time. Now I know that is not the case and what I am currently feeling will be like what I feel on a good week. If not worse as fatigue is more or less definitely going to worsen. Kind of feel tricked by the first two sessions. I know I should be grateful that I felt good over Christmas but I just feel like my hopes had been raised and now they are dashed. Need to get my head around this but still secretly hoping this is just a bad month! Got to be realistic (I tell my patients this all the time!) and face up to the fact that my goals one day may only be to achieve a walk and a read of my book.
2. Prioritise daily tasks: here I am lucky that mum is doing all the boring jobs (!) so I only have to consider things I actually want to do. Although obviously a daily bath/shower needs to be top of this list. I hate bath times now. Once I have managed to wash with mum helping with my hair, put on cream, put bio-oil on the scar and cleaned my teeth I am absolutely exhausted- no exaggeration. I then have to lie down for half an hour to recover as I feel I have run a marathon. This is the worse time of the day and I dread it. Sometimes I consider being dirty just to rest for the day!
3. Exercise daily or at least every other day: I knew this already but just haven’t been able to face it. The idea of walking fills me with dread. My legs shake just walking down the stairs so being outside is like climbing a mountain. This point is vital though so I don’t get even weaker so is a non-negotiable point in the future. Today I got up and mum and I went straight out for a walk around the lake with Malika. Normally this would take me 15 minutes max but today it takes half an hour. But I do it! Have to rest for an hour when I get in though!
4. Have rest periods scheduled for the day: I haven’t been letting myself do this for the last few days as it seems like giving in but will try
5. Make yourself do attention requiring activities that require little physical exertion, like reading: normally I love reading and will go through books on a holiday. I also love reading magazines and will sit for hours with a cup of tea and a bar of chocolate reading cover to cover. Since chemo started I can't do this. I don’t have the interest or attention and just can’t be bothered. I know this is not healthy so I am definitely going to schedule in reading every day in my diary. I am normally a person who likes back ground noise. I will put the TV on and just have anything playing for the noise whilst I am doing other jobs. This normally drives Matt mad. Again since chemo I have wanted no noise in the house. I have just been sitting there staring into space. I knew this was bad but couldn’t be bothered with the noise. I can't spend 5 months acting like a zombie so again I am going to schedule in TV time. Mum is pleased about this as the silence is driving her mad!
6. Try relaxation techniques: not good at letting go and relaxing so this will benefit me big time and will be especially helpful when I wake at night.
7. Eat a protein rich diet: I actually haven’t really felt like eating much meat so I need to increase my protein intake.
8. Keep a daily diary to monitor your fatigue and see patterns: I love a list and a diary so this should be easy!
Feel slightly better that I now know what is wrong with me but depressed with the reality of it all. The next 5 months really is going to be a challenge and a boring one at that. My symptoms are getting me down though and it is so hard to explain them to anyone else. Unless you have suffered with chronic fatigue you really can't relate to how bad it is and how much it affects your daily life. Before this I had absolutely no idea. My day to day living is a massive struggle at the moment with every task seeming impossible. I don’t want to do anything because everything is so hard. I feel people think I am exaggerating or being dramatic because I look fine. I really, really don’t feel fine though. My arms typing this feel so weak and shaky that they are aching, holding my head up is a massive effort, there is a constant background nausea because I feel so tired and every time I change positions my legs shake with the effort and I feel slightly out of breath.
I know that I have to follow the plan above to give myself the best chance and stay positive and strong mentally but I don’t know how to do this. Everyone keeps telling me I am strong but I don't feel it. I think I just talk a good talk (being a physio will do that for you!). I have somehow got to come to terms with this massive downgrading of my life and change the whole way I normally live my life and deal with things in my life. I like to be busy. I like to do a hundred things at once. I like to store lists in my head for me and Matt. This is me and this is how I function best. None of these things I can do at the moment as I don’t have the physical or mental ability. How do you deal with that? How do you even allow that to happen? I suppose I have no choice and that is how and why I will deal with it and do it. No choice.
Appropriate song title for today……
http://www.youtube.com/watch?v=1oGdH5B_HEI
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